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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Help me figure out sudden sodium/electrolyte intolerance?

Aspen

Senior Member
Messages
145
I think you've figured out something important here. It does make me wonder/think if the issue is your POTS getting worse and maybe the spasms, migraines, diarrhea stuff are your body hopping itself up on adrenaline to try to compensate for the low volume and low BP. Then you get that high BP, as you said, when the body is trying to compensate for the low and just overdoes it.

Has anyone who knows about POTS evaluated it lately?
I haven’t seen a POTS specialist yet, rather new in my illness/recovery journey. As far as I know there aren’t any in my province. Most of the local POTS stories I’ve heard include folks having to travel long distances to find doctors who can help with it, but I’m not well enough to even think about doing that. I have a long list of things to sort out still, sigh... every day mostly still feels like a blind experiment.o_O:rofl: Thank goodness for this forum, cuz I have been experiencing improvements over the last couple of months just by trying random things out. And Dr. Stein’s course has helped immensely. But so far, my doctor and I are just doing our best to navigate all these new things while swimming in a sea of internet resources.
 

dave11

Senior Member
Messages
158
The most acute reactions were definitely from hidden corn sources, which I always react to quite badly. And then I realized that I think my Vitamin C supplement AND the electrolyte solutions I’ve been using all have corn products in them. :bang-head: So maybe this is all MCAS symptoms from corn? A promising theory, but difficult to fix... where in the heck do you find glucose powder for ORS that isn’t from corn or rice (another severe intolerance)??

Vitamin C supplements of the ordinary variety give me strong MCAS symptoms. Presumably, it would have to do with the manufacturing process utilized to convert the corn, which does not naturally contain ascorbic acid, into ascorbic acid. Instead, I use freeze dried camu powder, and Source Naturals C-1000 which is made from tapioca, and is corn free.

I am not allergic to corn itself, or to corn based fructose. So the problem for me is not corn per se, but how it is chemically modified for some products into a new synthetic supplement.
 

Aspen

Senior Member
Messages
145
Vitamin C supplements of the ordinary variety give me strong MCAS symptoms. Presumably, it would have to do with the manufacturing process utilized to convert the corn, which does not naturally contain ascorbic acid, into ascorbic acid. Instead, I use freeze dried camu powder, and Source Naturals C-1000 which is made from tapioca, and is corn free.

I am not allergic to corn itself, or to corn based fructose. So the problem for me is not corn per se, but how it is chemically modified for some products into a new synthetic supplement.
Very helpful, thanks. After talking to my doctor yesterday we decided to act as if this episode was both MCAS and magnesium deficiency, and see what happens. I took Claritin and within 2 hours most of the symptoms were gone except the muscle cramping and high HR. Those subsided overnight after taking calcium-magnesium and vitamin D before bed.

I’ll get some of that Source Naturals stuff asap.... I also need to find an alternate form of EVERY ONE of my vitamins! I had no idea til yesterday how many hidden corn products there are in the supplement world! I only started understanding and treating my MCAS at the end of October, and I guess I was lucky that I had a few months being largely MCAS-symptom-free by changing my diet without knowing all these other hidden things. I guess it was bound to catch up to me. Even Claritin has corn additives in it, hahaha, odd that the anti-histamine that makes me feel better is counteracting itself.
 

dave11

Senior Member
Messages
158
I also need to find an alternate form of EVERY ONE of my vitamins!

Glad to hear you are feeling better. 😊

In case it may help, MCAS makes me allergic to mineral supplements which are chelated with amino acids or are ascorbates. To avoid this issue, mineral citrates are my choice.

Also, I can not take B vitamins, as they are manufactured using a fermentation process. Fermented supplements can cause trouble for some people with MCAS. Oddly enough, the bacteria used in probiotics cause me no trouble at all.

The Source Naturals vitamin C tablets are large. They dissolve easily in a few minutes in a glass of water. If a high dose is needed, magnesium carbonate added to the water will take the edge off of the acidity and protect the teeth.

Besides being beneficial for MCAS, magnesium has the added benefit of removing calcium deposits from the mitral valve and arteries. I do not take a calcium supplement, only magnesium.
 

Aspen

Senior Member
Messages
145
Besides being beneficial for MCAS, magnesium has the added benefit of removing calcium deposits from the mitral valve and arteries. I do not take a calcium supplement, only magnesium.
Interesting... I was always told not to take magnesium without calcium. That might make it easier for me though, since I found a safe magnesium product today (transdermal) but not a calcium one yet. I really can’t survive without magnesium, my migraines get out of control otherwise.

I haven’t found the Source Naturals vitamin C in Canada yet, but will keep looking. I‘ll start reading through more of the MCAS section on the forum too, I’m sure there are some good supplement tips there. I started out thinking this was a POTS thread, but it ended up in a totally different direction! :headslap::D
 

xploit316

Senior Member
Messages
143
Very helpful, thanks. After talking to my doctor yesterday we decided to act as if this episode was both MCAS and magnesium deficiency, and see what happens. I took Claritin and within 2 hours most of the symptoms were gone except the muscle cramping and high HR. Those subsided overnight after taking calcium-magnesium and vitamin D before bed.

I’ll get some of that Source Naturals stuff asap.... I also need to find an alternate form of EVERY ONE of my vitamins! I had no idea til yesterday how many hidden corn products there are in the supplement world! I only started understanding and treating my MCAS at the end of October, and I guess I was lucky that I had a few months being largely MCAS-symptom-free by changing my diet without knowing all these other hidden things. I guess it was bound to catch up to me. Even Claritin has corn additives in it, hahaha, odd that the anti-histamine that makes me feel better is counteracting itself.


I react to corn products too. The Ketotifen syrup (Antihistamine) I bought recently had Maltitol and other corn related ingredients. Bummer as it really helped me sleep but gave me bad histamine reactions (Itchy skin and scalp). I react to rice flour too, not rice. Looks like they are adding something to the rice flour, maybe maize starch to improve volume. Have you found anything that helps with corn allergy apart from avoiding them?
 

Aspen

Senior Member
Messages
145
I react to corn products too. The Ketotifen syrup (Antihistamine) I bought recently had Maltitol and other corn related ingredients. Bummer as it really helped me sleep but gave me bad histamine reactions (Itchy skin and scalp). I react to rice flour too, not rice. Looks like they are adding something to the rice flour, maybe maize starch to improve volume. Have you found anything that helps with corn allergy apart from avoiding them?
It is a bummer! I started using Quercetin and Curcumin supplements this last month when I accidentally have corn or other things that cause reactions, instead of over the counter anti-histamines. They’re helping quite a bit, just watch out because curcumin chelates iron so I have to take iron supplements (at least double of the daily recommended dose) along with the curcumin otherwise I can’t sleep. These supplements won’t make you drowsy though, so it won’t be a bedtime substitute unfortunately, just a better way to recover from food reactions.